Tuesday, December 2, 2008

Surgery and The Christmas Pageant!

Hello All,
I have not updated in a while. I just didn't have the time. I wanted to show you some pictures and a small video of our Christmas Pageant over here in Australia. This was actually way back on the 8th of November which was Isaac's birthday. We don't have Thanksgiving here in Australia. Some people may wonder why I mentioned that. There are many people who wish me Thanksgiving who seem to have no idea! Ha! The history behind Thanksgiving has nothing to do with our country, hence, why we don't have it! We have the Christmas Pageant instead....not a Thanksgiving Parade :-) So before I hit the pillow I wanted to show you some pictures. I have not included all the pictures but I thought it would be fun for you guys to see some Australian Floats in our Christmas Pageant. We still have all the presents and snow (I know that amuses a lot of people since we have a hot Christmas). We have toys and clowns and fairy tales and so on....lots of music and dancing. However, thought I would post mainly our Australian Floats for something different. Below is a fun float though :-) Obviously, this is a Kangaroo! Hehe. It has Aboriginal Art all over it which is pretty cool! It was raining on this day.
Once a Jolly Swagman camped by a Billabong, under the shade of a Billabong Tree...........hehe.....Waltzing Matilda, Waltzing Matilda............

Australian Cricket! Haha!



This isn't overly Australian..... adults with Down Syndrome get to be on a float and wave. I think it is great!




Of course....the good, old, Christmas Stocking! I remember it from when I was a child! That means that Santa will be here soon! I have no more Australian Floats posted by the way :-)


The Toy Train! Isaac LOVED this train since he is CRAZY about any train! Santa is almost here!



Hmmm......One of the little princesses and people will think I am SO strange as I can't remember the name of the horse who is quite well known in Santa's Castle and in the pageant!


I am disappointed with this photo of Santa and his sleigh! I couldn't get close enough with the crowd and it is a let down but oh well.....Santa is here! Hehe .....Isaac waved and was very happy!



So that ais a bit from our pageant! Oh yes, down below is a small video I took during the pageant. I like watching it. I don't know if it is majorly interesting but it is fun to watch it over and over again.....hehe...just cause I want to....hee. Enjoy the music and the clowns and some of our other floats! Click twice for it to work faster!



Down to other business....look at the time I need to get in bed! Ahhhhh. On the 9th of December I am having an abdominal infusa port put in to help with my IVIG. It has taken me forever to decide. I am REALLY uncomfortable with having a port in my chest. I know that some people will not understand that. As an FA adult I am trying to live my life without the impact of FA on me all the time. While the port is under the skin the pump is clearly visible if I wear certain clothes or swim or anything and I crave to be as normal as possible. Living as normally as possible in both physical and emotional sense helps me fight FA. This is important to me. I had a visit with the surgeon and some surgeons can be SO arrogant. Paediatric surgeons commonly put these type of infusa ports in the abdomin of a child and even up to 21 years of age but I was refused to see one because I am 30. So I was sent to an adult surgeon who is the BEST.....however, after seeing him today I am not too sure about wanting him to operate. I am doing more research and calling paed surgeons myself. He was unsure about putting it in the abdomin and after talking to me about the increased risks of doing that as opposed to a simple chest one he said, "I was hoping that all those extra risks would make you change your mind". I won't be scared into having something I so dearly do not want. It will only make me unhappy. I have no peace and I work on how I have peace about something even if I am frightened.....the peace that God gives me about stuff helps me to make decisions. I don't even want this abdo one but I am compromising and I feel a certain peace about it....enough to go ahead. I asked this surgeon to get hold of a paed and discuss how they do the surgery since he has not done one here since the 80's he told me.........even though he is very good. He actually right out refused! I find that arrogant. You don't scare a patient into having something your own way....the patient has to be comfortable. I know as a nurse....you do not scare a patient into anything. He was very bold. He was nice and we had a professional discussion but he was bold. I appreciated him saying, "to be honest, I don't know if I want to do this surgery".....when I asked him what he was thinking in his head and not saying. I said that I appreciated what he just said....and it is important he tells the truth but when I started to say that I want to ring a paed surgeon about it and he didn't......well I was uncertain as to whether he is the best surgeon for my port. I want someone who is sure of what they are doing....and won't compromise on my health care because he thinks something different. I was a bit discouraged when he said that his success rates for port is 95% and his complication rate is only 5% with surgery and by doing mine he didn't want to mess up his record. That attitude made me feel a bit upset. If he is that good,.....I am sure even though there is a risk of increased infection during the procedure.....because they have to track it up the vein further from the abdo.....I am sure he could do a good job. Is he not wanting to do it because he feels uncomfortable and unsure of how.....or is it because he doesn't want to mess his record if something happens differently to what he is used to.....does he care why that site is being chosen? It concerns me. He is VERY nice but he was also very interesting and a bit arrogant and I think the fact that I am a nurse scared him a bit because I know what terms he is using and asked more detailed questions. So tomorrow we are talking to a paed surgeon about the risks and why do they have no issues with putting this type of port in.........and they do it on bigger people too......I will work out if this excellent surgeon I saw is the best for me and I will make the decision in the next 2 days! He said, "call me by Friday and let me know what you found out.....what you decide"....don't you think this surgeon should be "finding out himself" if he is unsure and asking me if I knew how a paed does it for them to be so comfortable with the procedure.....interesting. I came out not wanting the port at all! *sigh* I will update you as to whether I still go ahead on Monday!
Ok, I need to go to bed. Could use some encouragement!
Oh my Christian Conference was SO great! Jesus is the Mighty, Mighty God and He reminded me of that at this conference. He showed me His power and His love and His grace! I was covered in the Power of God and not afraid to say so. I love Jesus with all my heart as my Lord and Saviour and my God and I am SO proud of accepting Him as My Jesus in my heart when I was 5 years old......I have NEVER turned back and I never want to. He encourages me with my walk with FA. He gives me strength! I am thankful that I know Jesus.
Ok, bed!
Love Charisse

9 comments:

Jennifer said...

I pray that you get peace with your decision. And that you find a doctor that is in agreement with you.

Your pageant was very pretty, I haven't been to a big Christmas one like that in a long time.

Blessings
Jennifer

Anonymous said...

Hello My Dear,

I didn't know you had blog! I'll bookmark it right now!

The horses are Nipper and Nimble, but I've never remembered which is which. We used to call them Nipple and Nimber!

I'll keep praying for you. Love Kendall xx

Anonymous said...

Hi Charisse,
God is always closer than we know when we go thro tough times. He will be with you in this decision also...for sure. Whichever way you go, He is with you. I pray that He will give you all the wisdom He promises.
Love you heaps and I enjoyed the day with you yesterday.
Mum

Anonymous said...

Always praying!
John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
Prayer Bears

Anonymous said...

Hi Chook

God will guide you! He always does!! This will be short today, James in Manila with the Pedders so I am doing everything and am exhausted. Will pray for you....God is your strength and shield...and your deliverer. Don't let the devil steal your peace...he will try!! But don't let him.

Gotta go to bed Cathy

Momma Bear said...

AWW Charisse!

I don't blame you for not wanting him! That makes my blood boil to think that all he cares about is his track record! Praying for the right one to come your way! Praying for peace with the decisions you have to make!

Blessings and Big Ole Bear Hugs!

Katie W said...

What fun to have a real, honest to goodness Christmas parade!! That just looks like so much fun. I'd comment on the dr situation, but I know you just posted, so I'll write there.
~Katie

Teresa said...

I can totally see why you weren't feeling comfortable with that surgeon. I think I wouldn't either! It's good for you to follow that peaceful feeling, and if something is happening and you aren't finding that peaceful reassurance...keep searching (which it sounds like you did since you have written another entry about the ped surgeon!).

I wish you didn't have to have the port, but it sounds like you are handling it very well...even if you don't want it either. I loved the photos and video of the parade...and hearing all of you talk in your pretend Australian accents (hehe!).

I promise to get to your email hopefully soon! I've been an email & blog reader loser with everyone lately (been especially bad lately...).

Love,
Teresa

Anonymous said...

I want to know what a kangaroo looks like. I know they are marsupials. What is a billabong tree? Man, I had another question for you but i can not remember it right now. My sinuses are driving me nuts, well nuttier than I already am, heehee, and it's making it hurt to think with my nose burning like fire and my throat feeling as though it has been attacked by a cheese grater. You know, I almost wished you a happy Thanksgiving when I sent an email to all of my address book, but then I remembered you lived in Australia. I felt kind of silly. Hey, check out my journal when you get a chance. I'm praying for you and I miss our online chats. By the way, feel free to post this as a comment to your blog. I'm still having trouble getting the audio capja files to play on my new computer. Take care. Jennifer